Report from the Public Private Partnership workshop
The focus on Public Private Partnership (PPP) emerged as PPPs are strongly endorsed as a model by EU grant funding schemes.
The stakeholders workshop Ethically and legally sustainable partnership between industry and public funded research initiatives: PPP and Rare diseases as a case study took place at Uppsala University, organized by the Centre for Research Ethics & Bioethics (CRB), RD-Connect and the COST Action CHIP ME on 7-8 November 2016. A wide range of Stakeholders took part to the event creating a very interesting and challenging discussion from different perspectives.
Public private partnership in research has been debated for a long time. On one side, there is a push to involve industry in the research flow to maximize efforts in therapy development, and, on the other side, there is fear about ethical and legal challenges, conflict of interests, and exploitation of public resources by the private sector.
The workshop highlighted the need to explore and define a regulatory framework, which still seems scattered and uneven. The tension between the need to provide incentive for researchers and at the same time, avoid ethical and moral hazards, is very relevant in rare disease research, where resources are scarce. There are different economical models for encouraging research and different ways of sharing risk and cost in PPP, and the choice of a specific economic model needs to be justified in terms of efficacy. Different kinds of problems will require different settings, and to suggest the best models for each case, more research needs to be done.
Some barriers to effective PPPs include a generalized lack of common regulatory, technological, and financially supportive frameworks, which outweigh the potential benefits for the citizens. It is therefore essential to explore ethical and societal frameworks that can account for sustainable models.
Deborah Mascalzoni, Centrum För Forsknings- & Bioetik,
Uppsala University, Sweden